Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act: “Yesterday evening, the House of …

One Family’s Struggle Inspires Them to Help Others This article appears in our Spring 2018 Newsletter. From 1967 to 1971, Thyra Burakowski’s husband, Anthony (Tony), worked for the United States Navy, and was in Vietnam from 1968 to 1969. “I cannot tell you much about Vietnam because Tony did not speak about it at all,” …

Posted by Christina Jensen, National Organization for Rare Disorders website, February 28, 2018 Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a pilot project that would …

Posted by Laura Mullen Washington, D.C., February 8, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding recent state proposals to alter their Medicaid program by utilizing the federal 1115 Waiver process: “In an attempt to control health care …